Relationships - What does it take to keep relationships strong in the aftershock of brain injury and beyond?

on Tuesday, 13 April 2021. Posted in Blog

Relationships - What does it take to keep relationships strong in the aftershock of brain injury and beyond?

David and his partner, Ruth, have spent 12 years together – half of them before and half of them after a road traffic accident that left David with a traumatic brain injury (TBI).

Their lives have changed in many ways since that day – but not their solidarity. So, what is it that unites them?

They shared their insights with us in the hope they might help others.

 

   It was hard at times not to laugh, but I did because, I think, all the way through, I had an over-riding feeling that everything would be ok.   

Ruth

 

David’s recollection of the film ‘Sleeping with the Enemy’ could have proven a provocative start to our conversation about his personal relationship with his partner, Ruth.

However, his mention of the 1991 Julia Roberts film related to housework during the covid pandemic – not the dozen years the couple have spent together.

One of the movie’s lead characters is an obsessively tidy man who, David, during the lockdown, has compared himself to, due to “excessively” straightening the contents of his own kitchen cupboards.

“I’m that bloke now,” he told us in a video link-up with the couple at their home in the UK’s Midlands. “If I’m not doing anything, I’ll tidy up. That is a sensible thing to do in lockdown, isn’t it?”

It is. As any neuro occupational therapist would concur, activities of daily living open the door to independence after brain injury – in lockdown or not [1].

And it’s this sensible approach that has also underpinned the couple’s relationship since David’s TBI in 2015 – six years ago and six years after they first met.

Common sense and an acute sense of humour, such as when David was discharged from the intensive care unit to begin rehabilitation on a different ward. 

“It was scary,” Ruth, 50, remembers. David was still recovering from surgery, having suffered a fractured skull, a subdural haematoma, a subarachnoid haemorrhage and bruising on the brain.

“But it was also very funny at the same time,” Ruth added, “because David would be off in this total parallel universe.

“For instance, I was back at work at this point and, because the hospital is so close, I used to go in and see Dave at lunchtime. But he would be convinced that I'd flown in from LA or some far-flung place. 

“I think he used to almost have a blurred reality of what our normal life was; like snippets of things that, perhaps, we used to watch on tv or that we've read about. 

“He would have an inkling that parts of that were our normal life.

“It was hard at times not to laugh, but I did because, I think, all the way through, I had an over-riding feeling that everything would be ok. I don’t know where that came from.”

David was 45 and a highly respected IT security consultant when he sustained his TBI in a collision between his bicycle and a car travelling at 40mph.

He was in a coma for a month following the accident, regaining consciousness only to experience locked-in syndrome for a further week.

How Ruth held the reins of their relationship single-handedly during that period is, in part, thanks to support from family and friends.

“My mother came and stayed with me,” she said, “and helped with a lot of the domestic stuff, like putting meals on the table. 

“And my son at that time was 17, so he was old enough and quite mature to help. Dave’s sister also came and spent time with us in the early days.

“So, yes, it was obviously a responsibility, but I did have a good support network around me as well as good friends which is important.”

Some aspects in the aftermath of TBI, however, can never be eased.

“It was so clearly very, very, very different from what we considered to our norm,” Ruth said.

“For many, many weeks, there was just a huge uncertainty about how it was all going to end up and whether Dave would actually stay alive, first of all, and, secondly, what his future state might be.

“So that was possibly the hardest thing to deal with; the uncertainty of the situation and the fact that it did change quite rapidly from day to day.

 

   You could feel that things were going very well and positively, and then there would be a huge setback, and you felt you were back to square one again.   

Ruth

 

“But I quickly came to learn that if they were telling you to go home from the hospital, that was actually quite positive.

“Because the times when they would let you stay as long as you wanted, the underlying sort of message was, well, we don't quite know how this is going to turn out.”

David’s return to full consciousness was “incredibly gradual”, Ruth added, but it was a turning point when he was finally transferred to a rehabilitation centre.

“There seemed to be an almost instant change in him from what had been a very weird state,” she recalled.

“It could have been due to that transition from a hospital room to perhaps seeing some of the outside world in the ambulance and then entering the rehab centre. And that was the point when I thought, yes, I think we'll be okay.”

David’s recollections start at the rehab centre. He has no memory of the accident or his treatment and care whilst in hospital.

“I know, when I got discharged from the rehab centre, it was the fourth of November,” he said.

Ruth…took me to the ward to introduce me to the carers and doctors from the critical care/neuro wards of the main hospital where I’d been based during the first two months following my accident - but I didn't recall the people or the surroundings.

“But there are things that I do recall from the rehab centre, like the first time we were allowed to go to Starbucks. It was a huge event…a beautiful vision of normality. Just doing normal stuff.”

David’s short-term memory has been severely impacted by his TBI, but he can instantly recall other facts and figures.

Like when he first met Ruth. “Ninth of October 2009,” he states. “I’ve told this story a million times, but it was the evening before my 40th birthday. So, they say life begins at 40. Mine began at 39.364.”

The couple met via a dating site to discover they were living just a few miles apart and working in related professions. 

David remembers their relationship before his accident as “amazing”; a recollection borne out by a cognitive exercise he once undertook after his accident in which he listed every holiday they had ever taken, the activities they’d enjoyed and the places they’d visited. 

Ruth feels they’re both fortunate that though David’s short-term memory has been impaired, his core personality traits remain unaltered.

“We were very lucky in that respect because I know that a lot of people who've gone through head injury are a different person when they come out.

“And I think that's possibly where there's a big potential for things to go wrong. But yes, fortunately, the core of Dave is still the same.”

 

   Things that previously seemed important, suddenly, aren’t when you've been through something like this. You sort of have a different scale of what's important and what’s not.   

Ruth

 

However, some of the outcomes of David’s TBI have wrought lasting changes to the couple’s lifestyle.

“I suppose the biggest difference was that, before the accident, Dave's career meant he was travelling around extensively and taking charge of situations,” Ruth said.

“He was very confident and sure in his own ability. But when he came out of the hospital, that was gone. Suddenly there were all these anxieties about all sorts of things that previously wouldn’t have occurred to him.

“And I think that’s one of the things to highlight: when somebody comes out of hospital after such an event, you’re unprepared for how different things are going to be.

“For us, there was a change in the balance of the relationship. 

“Whereas it had been very much 50/50 and making decisions together, Dave didn’t have the confidence for that in the early days after his accident.”

David agrees. “Yes, it was a change in role for me to 10 per cent rather than 50 per cent, but when you’ve got such faith and trust in someone, it’s not as alarming as it might sound for some people.

“I recognised that Ruth was taking charge, and I knew that needed to happen to give me the space to be able to get normal in my own time and my own space.

” I’d say it was only about ten months after my injury that I began to take more responsibility for myself and take on tasks.

For Ruth, taking charge sometimes required ‘tough love’ too.

“This particular day, we planned to have a drive out and a little wander around this market, and Dave said that he couldn't go.

“It was just a few weeks after being home, and to me, that was a bit of a no; we can't let that happen because if it happens today, we're going to be very quickly housebound.

“So, for me, it was about trying to recognise when I had to force things a little bit really because if we didn’t do it that day, the chances are that our world would become a lot smaller.”

Ruth took a month’s leave from work to support David’s transition from the rehab centre to home – but it proved key to her own acclimatisation too.

“Although we were all desperate for David to come home, it didn’t occur to us until he did that hospital is a very protected environment.

“You've got instant access to answers to any questions you have, you've got nurses on call, and the consultants are there if you need them.

“It's a very abrupt cut off in some ways that that once you're discharged, you can't just back up. That support really is gone, and it feels quite scary, really, that suddenly you are completely on your own.

 

   You quickly realise that now everything's different and you have to try to come to terms with that. It's trial and error.   

Ruth

 

To begin with, I was perhaps hoping and expecting that things would be a lot more normal a lot more quickly and perhaps overstepped what we should be doing.”

But if Ruth was learning the value of time in the recovery process, David was starting to realise he needed a new purpose in his life. 

“We realised that we had to keep moving things forward and look at the positive things,” Ruth said. 

“For example, I noticed on the days the occupational therapists visited and completed cooking sessions with David; he enjoyed being able to contribute in that way to the family unit and the running of the household.”

The acquisition of the family’s dog, Ronnie, also proved a daily motivation for David to get up in the morning and get out of the house.

“I don't think I was depressed,” he said. “I think I didn't know what to do with myself. 

“I think I've always been a pretty driven person. I always need to have something to occupy myself, but I want to have a purpose too.”

Throughout the couple’s readjustment to their ‘new normal’, they’ve learned several strategies they feel might prove useful to others in circumstances similar to theirs, as follows:

 

Start small

“It’s about having realistic expectations and being happy with what you’re doing at this moment in time, even though, maybe, it’s not what your ‘old normal’ used to be,” Ruth explained.

“Perhaps try to recognize that it’s not realistic to do some things at this moment in time, so start small and build things up gradually and be happy with those intermediate steps.

“And just try and think that gradually you'll get back to normal.”

 

Have – not haven’t

“The big thing for me was to focus on what you have got, rather than what you haven't,” David suggested.

“You haven't got a job, you haven't got X, Y and Z, but I’ve still got Ruth, and I’ve still got my daughter…and these are not trivial things.

“Maybe not everybody feels it’s important to have a wife or a husband, son or daughter, but that was the biggest drive on my recovery action.”

 

Better you know

“I think it's also perhaps recognizing that just because things are different, it doesn't mean that they're worse,” Ruth said. 

“They can actually be better by being different. And I think, maybe, that's what happened to us in a certain way.

“I mean, all relationships change over the years, don’t they, but [David’s TBI] was obviously something that happened that made things change very, very quickly. 

“Relationship-wise, though, I think things are better now than they were before. You know, taking everything else out the equation, just our relationship together is better.”

 

Outside influences

“Another important point…is that even when you're going through something quite traumatic, it's really important, I believe, to keep your own interests and your own friendships going,” Ruth said.

“It would be very easy to get totally embroiled in the situation that you're in and the medical side and the support side, but it's so important to go off and be able to carry on have some of your own life and interests as well.

“And we're still very much like that. We do a lot together, but we also do a lot separately.”

 

Acceptance

“You're unlikely to recover to be the same as you were before your TBI,” David predicted.

“Accept yourself. In the words of a friend, I made during my recovery: ‘Things are still normal, it's simply a new normal.’

“Stop apologising to people who care about you.  People around you recognise and accept your limitations; in the simplest of terms - they get it!

“You don't need to keep explaining how your forgetfulness is the reason you've not done something; after the tenth time, your friend/partner/family member doesn't need to be told again!”

*David is actively involved in research into traumatic injury as a member of After Trauma, a patient and public involvement group (PPI) hosted by the world-renowned Barts Centre for Trauma Sciences in London. 

He has shared his story with brain injury survivors in the UK via Headway and with US brain injury information hub, BrainLine. He also raises awareness of the North West Air Ambulance service that helped to save his life.

References

[1] Independent living skills

 

 Further reading

More about David’s experiences living with TBI here:

Valentine's day 2021 - Learning to love life again after traumatic brain injury

www.ineededtobeneeded.com

 

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